LBD Requires a Comprehensive Treatment Approach

Lewy body dementia, like Alzheimer's Disease, is not preventable or curable, but by focusing on what we CAN do, rather than what we cannot do, there is much that can be done to allow your patients to enjoy a higher quality of life. In fact, LBD patients tend to have greater cholinergic deficits but less neuronal loss than AD patients, so there is more potential for improvement and/or stabilization using the cholinesterase inhibitors. Additionally, there are good medications for many of the behavioral features of LBD.

In our experience, many LBD patients enjoy significant improvement with a comprehensive approach to therapy addressing cognitive, neuropsychiatric, motor, sleep, autonomic, and other medical issues, and many have remarkably little change from year to year. Clearly, not all patients experience this improvement and slowly progressive course, but for many LBD patients (especially those with little atrophy on MRI), the neurotransmitter deficit appears to drive the illness more than neuronal death. Such patients can improve with therapy, sometimes markedly, and do quite well, all things considered, for many, many years. Perhaps it is the lack of a comprehensive approach that many have not seemed to benefit. Perhaps there are biologic differences between different patient populations that lead to differences in the clinical course, etc. We in the LBDA firmly believe an aggressive and comprehensive approach is necessary with LBD patients, especially early in the illness, and some clinicians may not take that approach.

It pains us greatly to think of the LBD patients who see physicians who have the all-too-frequent view that "this patient has dementia, none of the drugs work so there is little to do, so get your finances in order and plan for a painful next few years when you won't recognize your family, will need to live in a nursing home....." This is the view of so many MDs, including neurologists and psychiatrists, and it is our (LBD specialists) obligation to educate the public and the medical community that LBD is very different than AD, and it is absolutely unacceptable to do nothing or take a nihilistic approach. We must also maintain realistic optimism, since there is almost always
something we MDs can do to affect quality of life - through medications, education, counseling, behavioral modification, etc.

Encourage your patients' caregivers to become good detectives, by carefully studying and identifying medications and other interventions or environmental factors that influence the LBD patient's function/fluctuations.